By ROBIN LORD STAFF WRITER Members of the public are invited to testify about their experiences with Lyme disease at a hearing held by the Joint Massachusetts Legislative Committee on Public Health at 10 a.m. Oct. 12 at the Statehouse.
Adult female deer tick (photo)
Legislators have asked people to testify, ''from the heart,'' said Cape Cod Lyme Disease Awareness Association President John Coughlin. Written testimony will also be permitted.
Legislators are interested in hearing about problems with diagnosis, treatment or insurance, Coughlin said. They would also like to know about problems that children with Lyme disease are experiencing in school, he said. The association plans to sponsor bus transportation to the hearing.
Lyme disease is a bacterial infection transmitted by the deer tick. Experts say the incidence of the disease in Massachusetts is three times that of the rest of the country, and Cape Cod and the islands have the highest incidence in the state.
The medical community is split about how to treat the disease after it becomes chronic. Some physicians, and prominent medical organizations, including the American Academy of Pediatrics and the Infectious Diseases Society of America, discourage long-term antibiotic therapy for Lyme disease.
Cape Cod View Others, including Falmouth physician Dr. Sam Donta, cite anecdotal evidence that long-term treatment with antibiotics has helped thousands.
Some Massachusetts residents say they have had to travel out of state to be treated. Increasing complaints by Lyme disease suffers led to a forum in Ayer in July sponsored by state Rep. Peter Koutoujian, D-Waltham, chairman of the joint committee on health.
Speakers at the Statehouse hearing will include Dr. Brian Fallon, director of the Lyme Disease Research Program at the New York State Psychiatric Institute; Dr. Daniel Cameron, who was the principal investigator of the W.I.R.B. double-blind randomized placebo-controlled study on Lyme; Dr. Charles Jones, a pediatrician in New Haven who treats thousands of children around the world for chronic Lyme disease; and Patricia V. Smith, president of the Lyme Disease Association Inc.
NOTE; The Cape Cod Lyme Disease Association will sponsor bus transportation to the Joint Massachusetts Legislative Committee on Public Health at 10 a.m. Oct 12 at the Statehouse. The cost is $18 per person. More information is available by calling Nancy Wood at 508-362-3189 or email her at [email protected]
(Published: September 28, 2005)
Posts: 24 | From Southwick, MA | Registered: Sep 2005
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I am encouraging people to attend because I really think that it is important that legislators see us.
Given the hostile position towards adequate treatment of Lyme disease that IDSA has taken in its position paper, there may well be a lot of pressure being brought to bear right now in Massachusetts from the other side. Boston, as others have mentioned here, is now home to many key members of the "Brand X" camp.
The legislators in Mass. need to understand what is at stake for Lyme patients and their families.
Seeing us present at the hearing is a necessary step in helping these lawmakers "get it."
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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sizzled
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Posts: 4258 | From over there | Registered: Jul 2001
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If you are trying to sign up for a bus and have not received a reply, try another method of reaching the organizer.
Persistence, Lyme friends! That is what we need to prevail.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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That is what we need to prevail.
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